"Deaf relative to my Hearing Dad"

About: Luton & Dunstable Hospital / Cardiology

(as a relative),

My concern is when my Dad was diagnosed having dilated cardiomyopathy last November, 09. He was very ill last August. Me and my brother we were told by the nurse at CCU that we need to have Echo screening. I am struggling to get my GP to refer me as he said he want to have the letter from the hospital. Okay. Fine. But my brother he got a referral to have Echo as his GP had been booked him for Echo. This was last Thursday. I do not understand how he can get the referral for Echo while my GP has to wait for the have letter from hospital. I am now confused as I thought we would have the rough same time to have Echo appointment. I have not seen Dad's Cardiologist to talk about Echo, as dilated cardiomyopathy might be hereditary. I felt so left out and I am scared cos I got a daughter to think about. There is family history of heart problems. I would like to know what to do and how can I ask my GP to refer me to have Echo? He once to refer me refused me to see specialist. This is my concern if he refused me before then he might refuse me for Echo. There is a long story to it, I try to make it short, when Dad was ill last August, we were treated very badly while he was in E&A as he was waiting for CCU bed. He was not given any drinks or any tea from 4pm to 9:30pm. My brother has to go out to get him cuppa of tea. The nurse at E&A was very rude to me and my Dad. They talk over and ignore us. My Dad was angry at me for not knowing what is going on and why he was kept waiting and waiting and no foods etc. My brother had to go home early as he does not drive. At 9:30pm, a nurse came to take Dad to the ward, while she was putting my Dad in to the wheelchair, she walked off while I went to get Dad's bag. Then I was given an angry look by my Dad wanting to know why he is in the wheelchair where is the nurse? She gone. Seen nowhere. I had to go and find her but can't find her. She came back and talked too fast; Dad could not understand her. I have to explain Look I am deaf please talk slowly. So she did but it was not that easy to understand her as her lips pattern is not the same. She is too busy rush about. Took us to the ward for a bed as it is not CCU. It was so confusing for us all. Very bad. I had a talk to a nurse on that ward she is great very understanding and gave Dad some tea and something to eat but not hot meal that he would have liked to have. All the nurses and doctor are great with my Dad okay but I wish they could have done more to get me involved with my Dad's care when I said I am deaf. They looked and then said sorry I am busy talk to the nurse. That is not right. One doctor is great he took his time to explain which it is brilliant but one problem is Dad kept seeing so many different doctors and I find it very hard to kept it up. I felt so left out and worry about Dad why he is ill etc. Now I got the name to his illness that does put my mind at rest but Echo screening...where is the information? It seems no one has explain to me about Echo screening. That is my concern as I would like to have someone to explain. I am only one Deaf in my family. All my family is hearing. I would like to say about signtranslate, a website called Signhealth. I would like to know if the hospital are aware of signtranslate. Why it is not wide available? As I am aware that hospital are saying interpreters are not cheap to hire for the deaf. Which it is shame as it takes them to book two weeks in advance to get interpreter. So signtranslate might be the best way for the hospital and for the deaf person to able to communicate on webcam between doctor and me as a family member. Dad would able to relax as he do not have to worry about me as I can able to follow it up between Dad and the doctor. For me to able to ask any questions to the doctor like cardiologist or eye specialist. It is very important for the deaf relative to their hearing family. And for the deaf patients that need access to their health to able to know what wrong with their health when they are ill or being told by their doctor at the hospital. I know cos in the past, I was not given my right to have interpreter when I was so ill, I almost died and I lost my first child. That was scary moment of my life. I did not get any information on why I was so ill and did not realise how ill I was until I went home and went to the library. My Consultant had asked for interpreter for me He is a good person. Interpreter fax me to say sorry cancelled. LAST MINUTE. That the same day I was to go and see my consultant. I felt badly let down by social services for the deaf. They can not find me another interpreter to cover the one that cancelled. I was so upset. But I have to go to my consultation with my family member but I can tell you it is not the same having interpreter as my family can not sign. Remember I am only one deaf in my family so all my family did not sign. So again I miss out lots of information. I am hoping that now having the Disability Discrimination Act and more Deaf awareness training for the staff doctor etc medical staff will be more understanding about deaf. There is lots of questions I want to ask and I would like for them to have the answers as I am concern for myself if I am to be diagnosed to have dilated cardiomyopathy. How the hospital can provide me interpreter if had to be two weeks notice, who book the interpreter? I want to put my mind at rest knowing that they are doing everything to help. I am not only one deaf person that is having problem with hospital or GP as I feel that some staff lack in understanding of how to help the deaf. Thanks for reading my story.
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